Befuttled...????

Paulette23

I finally went for my oncologist this it yesterday. Finally. Had two surgeries in September and it took this long for my surgeon to set an appointment. When I saw the oncologist he acted .....befuttled.since my onco test was dead center in the middle of the grey zone at 25 and I have numerous comorbilities.... it was not like he was confident one way or the other place for b chemo or no chemo. He finally....after much hmmmm...notable ....unsure confused looks....said he would recommend chemo and  it  would be four doses for the next few months 3 weeks apart.Because I have other health issuse I could see he was unsure.....would it be beneficial or harmful.

. Because I am in that questionable grey Zone....this drug could worsen cardio....anther worsen neurophaties....another intersistal cystities.....but one may help autoimmune and lupus pbms.....

I don't feel that he was confident whether I should or should not do chemo! So the ball is back in my court do I decided to chemo or not? I have multiple autoimmune problems which complicate matters  problems. 

Then to complicate matters My blood test today show my liver function tests are slightly elevated and my kidney function test are  low......this is the first time I've had kidney function and liver show problems.I wonder if the radiation did this....

He pretty much left it back in my hands whether or not to do chemo. That is very frustrating not getting advice one way or the other because I am dead center in the middle of the grey zone.has anyone else been in this position not knowing which way to go?

I asked about a second opinion and he said he felt that other MDs wouldn't say much different because of the complexity of my health. He wondered why Moffitt did not have me see their oncologist. ....so do I except that my hubby made remarks to see an oncologist closer to home. We are two hours away from them.

Is it better to have an oncologist closer to home????? Do they all do much diff in treatments?  this one is  a mile away.....moffitt is 2 hrs....ai don't have much time to look around as I am 6wks post op now. The surgeon waited forever to set the appt......

I'm befuttled.....

2timer

I'd definitely go to Moffit for a second opinion. You're fortunate that you live close enough to such a good cancer center. With how complicated your situation sounds I do not see how you could NOT get a second opinion. They might be able to help you decide on whether or not to do chemo. Wish I could help more.

mdg

I would also get a second opinion. I also preferred having my MO closer because I had to go there every week for an appointment during chemo (blood draws), chemo days and the day after chemo for shots. I felt like I went there all the time so a two hour drive each time would be out of the question.

SpecialK

You could do a consult at Moffitt to see what they recommend but still get treatment closer to home. They will either confirm what your first oncologist said, recommend something else that could be implemented locally, or tell you that chemo is not a good idea. You should be able to be seen at Moffitt fairly quickly. I have a friend who was recently treated there and had surgical, oncological and rads consults in very short order.

Paulette23

I had my surgery at moffitt. ...don't know why they did not refer me to one of their oncologists. ....odd...except I had major issues w the surgeons RN....then when i sent 1 email it caused pbms because of their email system. if you send one email with their patient portal it cc's like 5 other hospital upline people. They thought I emailed a bunch of people ......when I sent ONE to the MD...it made them think I was causing pbms....I was attempting to get my record's corrected. when I

called with a legitimate medical concern after surgery....the RN didn't call back. everyone was great untill the issues with the nurse and emails. I feel like they left me hanging with no ability to get assistance.

Paulette23

everthing at moffitt took forever! even though I had an agressive, large tumor. I went there because its a comp cancer facility......but they really dropped the ball on my case. It only takes one bad apple to make your treatment impossible. everyone else was FANTASTIC but this one RN made roadblocks for my care. Its sad how someone who has power between you and the MD can really literally kill your chances to getting access to the best treatment. both my hubby and I are medical professionals and are dumbfounded.....

edwards750

Paulette - I missed something; what issues did you have the nurses and emails? Also def agree with the others - get a second opinion. I would not appreciate the doctor's response that getting a second opinion would not be that beneficial because of your complex health issues. That is for you to decide. I think a lot of doctors say they would be okay with seeking another opinion when in reality sometimes their ego gets in the way of allowing another doctor's input. That happened to my youngest son. The doctor even called me and said he was available for the doctor to call him - okay that was allright - but also he was confident it would be the same Dx. It wasn't. I didn't have treatment concerns with my Oncotype score because it was 11 but I know several women who are/were in the same boat as you are...what to do, what to do. I think a second opinion will give you peace of mind. Having chemo is a big deal and a difficult decision. You need medical expertise but the decision is still yours. My BS didn't recommend an oncologist for me - actually the friend who recommended him did. I like her - she is very direct and compassionate; I see her every 6 months. While a lot of us may have had our surgeries, etc., in a more timely manner than you did I am sure they would not have delayed those procedures if you had a situation that could not wait. Let us know what you find out from the second doctor. Good luck. Diane

Paulette23

I have already set a second appt w a diff oncologist. hopefully she will be of more asst. I always get leary if an MD doesn't agree w a second opinion. especially with a complicated med history. now I find oit my liver results are high and kidney function low....new since surgery and high dose radiation. ....aalaloa lot of bad news all at once. like I didnt have enough with autoimmune pbms. I knew simething was wrong with how Im feeling.....when it hits the fan....its like a *#*# huricane! yehawwww! it just keeps getting better! lol....I gotta laugh.....better than crying!!

Paulette23

I sent one email which I thought went to my doctor. Instead it went to upper management and to at least 5 people that I know of! Apparently people must have gotten cussed out or something... Because they told me I emailed people all around the hospital! All I had done is sent one email to their patient portal and it bounced up around the hospital! It created a hostile environment for me as a patient. eware a patient portals and emails to hospitals!

Paulette23

The oncologist recommendations ...cytoxin and latotere then tamoxifen. ....anyone had that combo?

christina0001

I had taxotere and carboplatin (with Herceptin) so I can't speak to what your onc is recommending.

I would also suggest getting a second opinion, at whatever hospital/cancer center you have the most confidence in. I fell into a grey area as far as radiation goes, and I got a second opinion, and it was extremely helpful.

And I do agree with your husband about trying to stay close to home, as long as you are comfortable with where you are going. You are going to have lots of appointments and treatments, and it helps a lot to not have to travel far, as you will probably not feel very well some days, and also the cost of gas and wear and tear on your vehicle adds up quick.

Best of luck to you.

Paulette23

I would perfer closer to home but I don't have confidence in that onc. soi have 2nd opinion next week....I wanna just fall in a hole right now and ignore it all. I know I can't.....just wanna though.especially since my liver and kidney results suck since surgery and rads......

Hortense

I had four doses of Taxotere/Cytoxan given three weeks apart at a major hospital's breast cancer center two hours away from me. I would never go to a local doctor simply for the ease of it. Whatever your decision, should you have chemo, be sure to ice your nails, both fingers and toes, during Taxotere infusion to ward off damage to them. Crushed ice in ziploc bags works very well.

Paulette23

thks for comments.....the autoimmune pbms complicate matters...I have raynauds, mixed conn tissue disease, lupus, abnormal vascular , cns , autonomoc dysfunction multisystem damage, neuropahies.....now kidney and liver pbms....the list goes on....I feel damed if I do damed if I ddodondon'.t

gonegirl

hmm. Going with tamoxifen or an ai might be your better bet, especially with all the health issues. Definitely a second opinion. I've learned quality of life matters a whole lot.

Paulette23

I found second op wa s my best for surgery.....the first surgeon said full masc w no rad and no recon. then their plastic guy said hey might as well do double masc w/no recon. ....after all id be "balanced....and there are LOTS of super models who are flat chested" ...only had 2.7 cm cancer on rt breast! .my second surgeon said lupect. w single rad. could do the job !

Paulette23

hoping for great second opinion! is anyone else having pbks with site entering duplication of words when writing second paragraphs? or is it just my phone?